A woman and her powerful voice reach over mountains as she uses it to advocate for her medical care.

Excuse Me, Is This Thing On? Being Your Own Melanoma Advocate

Let’s be honest, when it comes to medical stuff, I have no idea - I leave that up to the professionals. But when it comes to my own body, no one knows that better than me. At times, you have to be your own advocate.

The start of my melanoma self-advocacy journey

About 4 years ago, I went to my general practitioner to check a funny mole I had on my shoulder blade and he assured me it was fine. Six months later, my family insisted I go back. I went to another GP and he said the same thing. Then around 3 months later, I just had a feeling in my gut that the mole wasn’t quite right.

So this time, I went to a skin specialist. He looked over my body and said I was fine. I then insisted he check the mole more closely and I asked if we could get it tested. He said, "it looks fine to me, but we can send it away for testing." A few days later I heard the words “you have a stage IV melanoma”. Since that day, I have had my skin checked every 3 months and it’s been completely fine.

Don't take "no" for an answer

Then one day in late December, I felt a tiny lump in my arm, so small I almost couldn’t find it the second time I tried. I thought it was perhaps a boil starting under the skin, but after two more days, it was still there. So, I made an appointment see my dermatologist.

I showed my doctor the lump and he said, “I can’t feel anything." So, I grabbed his hand and showed him exactly where to feel. I made him keep feeling until he knew what I was talking about.

He told me it was probably a boil forming, but I insisted it had been a few days and it didn’t hurt, it wasn’t sensitive, and nothing had changed on the outside of my skin. So, he sent me for more tests and 4 days later I was diagnosed with stage IV melanoma. It turned out there were two lumps there.

My comorbidities

Let’s take a little detour from cancer for a moment. One night when I was 21, I was at a guy’s house that I had just started seeing. In fact, it was the first night I had slept over. I woke up sweating profusely and with intense stomach pains. I raced straight to the bathroom and assumed I had food poisoning. Next thing, I woke up on the floor of the bathroom because the pain was so intense, I had passed out.

I went to the doctors and they said nothing was wrong, but I knew that couldn’t be true. This cycle continued and for years I would get extreme stomach cramps, often followed by diarrhea and sometimes fainting.

I kept getting told nothing was wrong - I must have eaten something bad, maybe my body doesn’t like lactose, or maybe avoid gluten. However, I knew it had to be something more. I just kept seeing more doctors and after many, many tests, I discovered I have irritable bowel syndrome and endometriosis.

Be your own melanoma advocate

I don’t share these stories with you to scare you about the medical system. I have had so many amazing doctors and I’m not blaming anyone. I share this to remind you that sometimes you have to be your own melanoma advocate; you have to know your own body and trust your instincts.

Doctors will base things on the limited information they have in front of them. They looked at a young healthy woman and knew the odds were in my favor, so cancer was unlikely. But sometimes you are the anomaly.

Be vigilant and ask questions

So get to know your body, look for any changes, listen to your gut, and speak up for yourself if something doesn’t feel right. ASK questions, don’t be shy. Doctors only tell you what they have to, but you need to ask for the rest. No one ever told me to check for lumps. I was looking for suspicious moles, checking for changes on my skin, no one mentioned what could happen under my skin.

Don’t expect someone else to advocate for you

I was naïve to think they would tell me everything that I needed to know without me having to ask, but doctors are busy. They can’t tell every patient, every single thing that MIGHT happen or what they MAY have to look out for. Take your health into your own hands, don’t expect someone else to advocate for you. If I hadn’t listened to that niggling feeling in the back of brain, I might not be here to help you learn from my story.

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